In June of 2017 our world changed. In the middle of the night Hayden requested to sleep with me (mommy) because he wasn't feeling well. A couple of hours after he fell asleep I awoke to what I thought was gagging. I asked Hayden what was wrong, but his reply didn't make sense, so I sent him into the bathroom and followed behind.
As I approached Hayden I asked what was wrong, and again his reply didn't make sense. Once I reached him I grabbed Hayden's shoulders and gently turned him around so he was facing me. It was then I realized why his speech wasn't making sense - half of his face was paralyzed and he was drooling. Panicked, I called the exchange for our pediatrician, who sent my information to the nurses at St. Louis Children's Hospital. They returned my call immediately and instructed us to call 911.
Living only minutes from a West County Fire Department it wasn't long before the ambulance and fire truck were parked on our street. After a thorough check, the paramedics said he was fine and they were stumped, as his symptoms had resolved. They asked if we would like to be taken somewhere for a more thorough check, at which time I requested we be taken to St. Louis Children's Hospital.
During our stay Hayden underwent several different tests, including a CT and an EEG, after which we were informed Hayden had a seziure and he had something called Temporal Lobe Epilepsy. We were informed he would be on seizure precations (no climbing heights greater than his own, no bathing/swimming alone, no campfires alone) and told to follow up in 6 months. The first 6 months went by without concern. When the 7th month approached we had concerns Hayden may have had another siezure overnight, so we ended up on seiuzure precautions again.
At our 1 year follow up Hayden underwent another EEG. This required him to be sleep deprived (going to bed at midnight and woken at 4am). This EEG revealed slightly different diagnostic results. Instead of the abnormal waves being in only one part of Hayden's brain, they were now more widespread. He now had something called Benign Rolandic Epilepsy - or Benign Childhood Epilepsy. This meant Hayden was at a higher risk for having another seizure. As a result, he was put on medication, something he would have to take daily for the next 2 years.
Thankfully, we're now one year into the medication and are counting our blessings that we haven't been more impacted. Because Hayden's seizures have always happened at night we can only hope, as they seem to be, that they are controlled by the medication and that they will remain to be. We also hope that one day he will outgrow the epilepsy and will one day be seizure free for good.
The Seize the Day 5k Run/Walk in St. Louis, MO on Saturday, June 22, 2019 is a family friendly event which raises money to benefit the Epilepsy Foundation of Missouri and Kansas.
We need your help to continue the fight to stop seizures! 1 in 26 people are diagnosed with epilepsy and it is estimated to affect more than 250,000 children and adults in Missouri and Kansas. Please help us win the fight for people in our community that are challenged with seizures.
Register for the event as an individual or create a team to fundraise for the Epilepsy Foundation of Missouri and Kansas. Packet Pick-Up will be on Thursday, June 20th from 12:00 - 7:00 p.m. and Friday, June 21st from 9:00 a.m. - 4:00 p.m. at the EFMK Office at 4406 St. Vincent, St. Louis, MO 63119.
Participants are encouraged to register before June 10th to guarantee your shirt size. A limited number of shirts and sizes will be availalbe at packet pick-up and on race day.
We will have on-site registration available on race morning if you have any additional family or friends who would like to join us. On-site registration will open at 6:30 a.m. on June 22nd.
Thank you for supporting the Epilepsy Foundation of Missouri and Kansas!